what is the worst thing about having spina bifida.?

[cadon's mum]

This is a question to everybody, I had a home visit today from the child development centre and i was asked what my main concern was for cadon, she assumed that it would be that he might not walk. I have been sat thinking about it all day and for me it's probably his hydrocephalus and the worry that comes with a shunt, but i am thinking as a parent, what would he say?

[Dodger67]

Medically - Tethered Chord is really scary, by comparison shunt revision is minor surgery.

Generally - It is a barrier to forming relationships. (Relationship issues dominate the topics in the Adults section.)

[eng188]

I live in an aftercare setting in W. PA. A normal apartment building, but with access to the local SBAA chapter when needed. I am therefore around SB's a lot. Some of their self care isn't so good, and one takes an ambulance trip just about every week because of her kidneys/bladder. Stuff like that scares me.

As well, I have not had a shunt issue since childhood, so how would I handle it on my own?

I think I echo what the previous poster said in tha it ipacts relationships with people, both romantic and platonic. People are either scared of you/for you, repulsed by you, or feel sorry for you and want to hold open every door for you, but don't want to be your friend. I feel intense isolation and inability to find my place in the world.

[Summer25]

Shunt surgery is nothing compared to other things. In 1 day, have a CT the next to make sure it is back where it should be, and then home the next. Nothing to it...lol. My issue would probably be the bowel and bladder. Growing up, I never had issues with relationships. So, I guess I am lucky.

[dahliafaolan]

I guess for me, it's the feeling of the opportunities that are closed to us because of other people's perceptions of what should and shouldn't be. I have been in a passionate love affair with dancing since I was very little. If I had been born "normal", I know I would have tried going into Juliard or something to make a living at dancing. However, being in a chair, I knew that the world just wouldn't have the sort of open opportunities for me in that arena so I went to college for something I was not as passionate about. While I believe I can have a very successful life in my chosen profession, it leaves me feeling a bit...unsatisfied with the road chosen and thinking quite often about the road less traveled.

Also, I think another of the most difficult things about living with SB is learning how to define myself as an adult. To me, sexuality is part of how the average person defines themselves as an adult. Though for a person with a disability such as SB, this self defining can be difficult at best. While I have never had a problem forging a relationship, I have always had some difficulty with the intimate aspect of the relationship. There is always the fear that the person I'm with will just get tired of dealing with all the issues that come up with the Spina Bifida that they will forget who I am. As I recently explained it to my boyfriend, I am scared to get into a truly intimate committed relationship (i.e., living together or marriage), because I am afraid that my partner will spend so much time being my caretaker that they will no longer feel like my lover.

Ok, I think I'm done rambling for now.

[LisaJoy]

Notice that no one has said anything about walking. I would say the social isolation that results from societal attitudes toward disability. I feel that I have no really close personal relationships. And yet, I'm a very social creature. I'm active in my church -- sing in choir, ring handbells, teach adult Bible study classes, serve as a deacon. I teach college, which is a very people-oriented career, and I'm professionally active on campus and off. And yet I don't even have anyone to just hang out with. I spend most of my free time alone. Most of the time I don't mind, because I'm so very busy. But I do feel it at times, and I do think that I'm introverted and shy because of being very much an outcast as a kid.

Dahli -- a couple of links for you.

http://www.ridance.com/ridisdance.html
http://www.danceability.com/

[Dodger67]

Lisa that is so true! Even in terms of my family I am the outsider. My girlfriend is my only close friend.
SB really messes with relationships.

Dahli have you considered learning choreography?

[dahliafaolan]

I'd love to. I am currently looking into a few dance studios in my area to see which ones will be brave enough to teach my boyfriend and I ballroom dancing. I had tried taking bellydancing at my school, but both of our gyms are nonaccessible so I'm currently battling with the school to get them to comply.

[angel]

I am going to say it is the bladder issues. I have never had a hard time forging relationships. I am still best friends with my best friend from school. I have made great friends through my life and finding someone to hang out with was never really a problem. I never felt socially isolated and was not picked on to much as a kid. I had an attitude, so a elementary school friend I recently reconected with just told me. To me I thought i came off as shy and uncertian. To them i came off as confident with a I couldn't care less if you like me or not attitude. Funny how people see you differently than you do. He said it didn't seem to bother me so it didn't bother them. In jr. high I had one rough year.
I agree withyou dali. I would have been a dancer of some sort had I been able to do it. I LOVE IT! The SB won't keep me from getting on a dance floor and dancing the night away it just keeps me from doing it well.

Angel

[Gymp]

Well the worst thing about growing up with spina bifida for me were the continence issues.I used to worry to no end that the bag I was wearing would spring a leak and I'd be laughed at for peeing my pants even worse was the thought of pooping my pants.Heck only babies did that I used to think.The thought of ever finding me a gal who could accept me with those two issues used to weigh in my mind quite heavily.I'm a very social type of person and need to interact with others which I did but those issues were always there.I missed out on some great opportunities because I felt the need to be close to home in case I had a bowel or bladder accident.It took a long long time for me to come to terms with this but I did get past it,the thoughts are still there but I no longer let it get the better of me.

The main thing that worries me now about sb and please don't be angry with me Lisa,is loosing my ability to walk from tethered cord.My wife is a paraplegic (entire left side) after being in an automobile accident and is now in a wheelchair.If I were to loose my ability to walk,how do I take care of her,how will I be able to cope.I know the kids and our families would pitch in but they have their own lives to lead with problems of their own,I wouldn't want to burden them.I absolutely love riding a bike and working in the yard,mowing the grass,tending a vegetable garden that feeds us year round.I know I complain about shoveling snow in the winter but in reality I don't mind it,it gets me outside.I can no longer walk in a straight line when I go down the sidewalk I look like a drunk walking.I trip and fall moreso now than ever,each time I go down it's getting harder to get up and when I do my lower back is going to bother me for a bit of time,as the years go by it's getting worse.This may seem stupid and maybe selfish to the members here in chairs but I'm really afraid of loosing this ability.I know I should get it checked out but the prognosis of healing from a detethering of a person in their 50's isn't rosy.

Gymp

[angel]

Gymp,
I fear loosing my ability to walk as well. I don't think anyone in a chiar would take offense to that. At least I sure hope not. It is what we know. Eventhough I walk with crutches I would still miss it terriably. I know what you mean about as you get older things get harder. I think that my sholders are going to eventually get to the point where I have to stop. I just hope it is at least 20 or 30 years down the road.

Angel

[LisaJoy]

Gymp,
That doesn't make me mad at all -- I worry about eventually losing the ability to walk, too. I just thought it was interesting that most people, including wheelchair users, didn't list not walking or difficulty walking as the "worst" thing about sb.
Lisa

[angel]

I think difficulty walking or not being able to walk would be the last thing on my list. Even if I do go to a wheelchair full time at some point in my life it will still be the last thing on that list.

Angel

[Dodger67]

I gave up walking on my own terms in my early teens - it was my decision and I have no regrets about it.

[naomi6896]

yes I also at one time thought "walking" for my son would be the biggest issue as that is all the doctors ever talked about really that and his head size for Hydroceplaous, Now it is the tethering of his spinal cord that scares me him being independent and finding friends that can accept him for who he is. My son loves to make you laugh and he has a great spirit...............I hope the world is lucky enough to see him the way I do! So I guess my fear is that he is healthy, and accepted by others. As a parent I think those are the same worries of any parent.........

[Summer25]

Just to add to the walking thing. I do fear being put in a power wheelchair. Right now at this stage in life I would refuse. It took a lot out of me to finally decide to go to power assist wheels. I was so active as a child and just having to give up all the sports I loved doing was hard. I however, am hoping to take up tennis again. So, that is another fear of mine.

[cadon's mum]

Thank you all so much for your honesty, i could read a hundred books about the issues that cadon will face growing up, but it's really not the same as talking to someone who has been there.

[Mustang Sal]

Notice that no one has said anything about walking. I would say the social isolation that results from societal attitudes toward disability. I feel that I have no really close personal relationships. And yet, I'm a very social creature. I'm active in my church -- sing in choir, ring handbells, teach adult Bible study classes, serve as a deacon. I teach college, which is a very people-oriented career, and I'm professionally active on campus and off. And yet I don't even have anyone to just hang out with. I spend most of my free time alone. Most of the time I don't mind, because I'm so very busy. But I do feel it at times, and I do think that I'm introverted and shy because of being very much an outcast as a kid.

Dahli -- a couple of links for you.

http://www.ridance.com/ridisdance.html
http://www.danceability.com/


I could have written this myself Lisa. Although i've always been able to walk so have not had to deal with too many accessibility issues that can contribute to social exclusion, I too have always been very introverted and tend to stay at home by myself most of the time. I've always felt 'different', and it's not even because other people have made me feel that way (my parents never treated me any differently to my sisters) - I don't really know what it is. I've only ever had one boyfriend, whom I was with for several years, but since that ended i've just been too shy and self conscious to get out there properly. I make out to others that i'm just picky, but deep down it's because I can't believe that anyone would find me attractive :( I know it's irrational, and I don't actually think i'm 'ugly', I just think my body is strange - I don't feel very feminine because of my weird anatomy and the way I walk. So I close myself off to people, and probably miss out on wonderful friendships and relationships, but I can't help it.

So that's me. Whether any of my self esteem issues are specifically related to SB or not is an unknown entity - I may just be made this way. After all, lots of people have these issues without having any sort of disability, so who knows.

[Mustang Sal]

Gymp,
That doesn't make me mad at all -- I worry about eventually losing the ability to walk, too. I just thought it was interesting that most people, including wheelchair users, didn't list not walking or difficulty walking as the "worst" thing about sb.
Lisa

I worry about it too. I know that if my legs did give up the ghost, i'd deal with it, but I don't want my life to change - like Angel said, it's what we know.

[eng188]

I gave up walking on my own terms in my early teens - it was my decision and I have no regrets about it.

I've been debating that as well. I still have lots of lower body function, but not so much balance. Plus, sometimes I feel more independent in a wheelchair (carry my own food tray, etc). When and if the time is right, I will.

[Donna]

Hi i aint to sure what to right only because i don't know what form i have got of sb but i know that is 1 thing that scares me and that is losing the ues of my leg's, and no matter how much my partner say's that he is here for me and he will do any thing for me it is still in the bk of my mind if thing's do get worse (hope not tho) he is going to get fed up on me relying on him all the time he is just going to go. But most of all my son and how will he cope with me not being alble to do thing's with him like i do now.

[LisaJoy]

I make out to others that i'm just picky, but deep down it's because I can't believe that anyone would find me attractive :( I know it's irrational, and I don't actually think i'm 'ugly', I just think my body is strange - I don't feel very feminine because of my weird anatomy and the way I walk. So I close myself off to people, and probably miss out on wonderful friendships and relationships, but I can't help it.

I could have written this, too! Bizarre how much we have in common, despite the age & geographical differences.

[dsmith]

Thank you all for sharing. It has helped me to read your words. Similarly, my 2 1/2 year old with SB loves to dance. We call her "Dancing Dani". She asks me often to pick her up and dance.

[usolyfan]

Thank you all for sharing. It has helped me to read your words. Similarly, my 2 1/2 year old with SB loves to dance. We call her "Dancing Dani". She asks me often to pick her up and dance.

My three year old is the same way. We dance when she is in her mobile stander, her wheelchair, her RGOs, or in our arms. She just wants to dance.

[UpNorth]

Medically - Tethered Chord is really scary,

That was what pretty much caused my dh's main problems- neurogenic bladder leading to loosing kidneys to infection, loss of feeling in his back and legs, pain and pins and needles and loosing function in his legs- drop foot, etc. and of course the anal sphincter issues.

[ilovelucy]

I appreciate how candid everyone is.
Your challenges with social isolation hits close to home, reminding me of my own experiences with people "different" than myself and the pity I would feel for those in wheelchairs, assuming that their life must be completely miserable.
Reminds me of a hearing impaired girl, coincidently named Lucy, in my 5th grade class and then a guy I knew in high school who had cerebral palsy. Lucy was a mere novelty to everyone who we would interact with at school but when it was time to have a sleepover Lucy never made the cut. It wasn't that we didn't like Lucy - it was more like we assumed she was disabled and disabled people have an alternate universe they live in once they leave middle school. It never occurred to me when I was young that people with disabilities liked to gossip, talk about boys or hang out at the mall just like every other adolescent girl in class. As for the guy in my high school with cerebral palsy, that's exactly my point - he was "the guy in my high school with cerebral palsy" - have no idea what his name was...

All this meaning that I understand what you're talking about, as I was once one of those obvious people that would sprint to open the door for you with a concerned look on my face or the girl in class that thought you were "neat" but never considered that maybe you were just another "normal", run-of-the-mill girl that wasn't all that "special". :) I think there was always an assumption that your mom or legal guardian had to be with you all the time. :)

[valerie]

i have been asked that a lot from a doctor that cian used to attend since birth, what are your fears etc. to be honest, there is so many of them, i dont know where to start but 11months on, i am taking one day at a time & trying not to worry about the unknown & what is going to happen, i do get days when i do think more about it than others but they are lessing. So try not to think ahead, fingers xxx they will be as happy, healthy and as mobile as possible

[hotwheels]

for me its my waterworks... utis, kidney stones, cathing and having accidents.

Also sexual, things not working there.

[Piglet]

"don't let the fears of tomorrow, steal your joys of today" and my son is an absolute joy xx

[janjanwhit]

Shunt. I have a terrible fear that it will block and Fergus will just die in his sleep. Followed by bowels and then bladder. Bowels before bladder as the smell is more noticable. Then probably kidneys. Last of all is whether he walks. Funny because it was my main concern when I was pregnant.

[Twinkle*bombom]

For me, I have always taken surgery etc in my stride. It is the lump that bothers me the most - it is very large and clothes don't look right on me, plus I look a good 2 stone more than I am if you look at me sideways. Ive never been able to wear much in the way of fashionable clothing - I live in hoodies and jeans to hide it best I can but obviously cannot wear jeans on my hips so I can only wear certain types. I know it sounds superficial but I do hate looking in the mirror as all I see is my back, and swimming is embarassing as people can see my back and they do look quite often, I try not to let it bother me though.

The other thing i found hard to deal with was having to use a mobility scooter at 16 and going to school on it - I had a lot of people make fun of it and it was really hard to do at the time as I felt left out, it felt wrong even, being on a "granny mobile" as my friends called it, but you have to make the best of these things and I did learn to like it in the end. School children were used to wheelchairs and didnt look, but a scooter wasnt regarded in the same way - almost like what is she on that for! I am very lucky that I can walk short distances and I know that now - in a way the scooter has made me who am I today as I no longer care what people think when Im on it, as I know it helps me and I rely on it now, wouldnt be without it! But yes, feeling like I didnt fit in etc was hard but you do get over it in time I found.

Also I am 20 and have never been liked by men, and I put it down to my back as I just cant see anyone wanting to go out with someone like me, no matter how much I say that its whats inside that counts. Call me superficial etc but I know I need to accept my back but I hate it so I think other people are going to hate it too! If Im not comfortable with it myself, how could I ever be comfortable letting another person near it? I just cant see anyone wanting to go out with a person who has a back like mine and I know I need to stop thinking that and stop blaming my back! But when you think that most girls without any disabilities feel pressured by the fact that men supposedly like thin, pretty girls then it gets harder when you factor in a deformity, at least it does for me. Its hard to say this cos I must sound awful and I know that others have a lot worse, but thats how I see myself and Its not going to be easy to change that. :(

Its strange, surgery has never been a problem for me, dont care about the scars etc, just silly things like the way I look and how others percieve me. For the most part I would say thats down to low self esteem rather than my SB though!

[ChrissyLuvsMariah]

Hello, I'm sorry to hear that you went through so much, I would never know how it feels to have SB but my unborn child will. I hope and pray that she will never have to go through that but I can only protect her so much. I'm going to do my best to help her live a normal life as possible. The doctor said her lesion looks like it starts at L2. If you don't mind me asking where does yours start?

[eng188]

I am a T-2 incomplete (I wasn't the one asked, but I thought I'd throw it out there anyway. SB can happen anywhere). I like what you said about deformity. For me, the scars don't bug me, but what bugs me is because my body s deformed, I find it very hard to find clothes that fit properly. My pants always drop a bit, even if I have the belt on tightly. I know part of it is my relatively new obesity, but even without that, I remember it being a problem.

[Dodger67]

The social isolation caused by uncontrolled incontinence - it ruined my teens and twenties!
It's the reason why I sometimes come across as a hard-case about getting kids sorted and in control of their own bladders and bowels as soon as possible. Being the class "stinky" in high school is hell!

Dating and sex is complicated. Finding a partner who will accept that intercourse without a penis can be good is very difficult - she must also accept that accidents happen and be able to deal with it.

[hope&faith]

This has been a very interesting thread. I appreciate the perspective from the adults with SB, instead of just parents like me. I do worry about Alex and social issues when he is older. The world is so screwed up when it comes to accepting differences. I'm afraid he'll feel left out or isolated. My other biggest worry is tethering, it scares the heck out of me. Bowel and bladder is up there but I figure we are on radar for those issues so it doesn't seem quite as scary.
Holli

[angel]

Twinkle

Girl you have got to let go of that crap! I don't think it is the back that is keeping people away. It is very clear just by reading that you want no one near you because you have body issues. I get body issues girls disabled or not and probably guys to have them. It is just part of being human. There comes a point (and i was older than you are when i reached it) that you just have to accept yourself as is and stop worrying about this stuff and live life without worries of things you can not change. Life will change dramatically once you do.
In high school i never had much trouble with guys, and you should see me. I am 4 feet tall, bent at the knees and hips. I was not even close to being the prettiest girl in school, not even in the running. I got dates because I made sure i was fun to be around. I figured it was my best shot, personality was all i had left, so i went to work on it hard!! I never let on that any SB issues affected me at all, they are there, i know i can't walk, who gives a shit lets go have fun! That was pretty much what i projected back then. I didn't really feel it honestly until i was in my late 20's. I dated one looser after another after another even after i met the man i eventually married. We lived in different states so we remained friends and put any thoughts of being together aside. I finally hit a point where I realized there are just some things i require out of life and out of a partner because i don't deserve the crap guys i had been attracting. Long story short about a year after that I married my friend and moved. Best decision i ever made. The opposite of anyone I ever thought would be interested in me. You never know what can happen when you just let go and figure out what you require and don't down yourself because you dont' think you meet someone elses standards. They have to meet yours!

Angel

[Justy Me]

Twinkle


In high school i never had much trouble with guys, and you should see me. I am 4 feet tall, bent at the knees and hips. I was not even close to being the prettiest girl in school, not even in the running. I got dates because I made sure i was fun to be around. I figured it was my best shot, personality was all i had left, so i went to work on it hard!! I never let on that any SB issues affected me at all, they are there, i know i can't walk, who gives a shit lets go have fun! That was pretty much what i projected back then. I didn't really feel it honestly until i was in my late 20's. I dated one looser after another after another even after i met the man i eventually married. We lived in different states so we remained friends and put any thoughts of being together aside. I finally hit a point where I realized there are just some things i require out of life and out of a partner because i don't deserve the crap guys i had been attracting. Long story short about a year after that I married my friend and moved. Best decision i ever made. The opposite of anyone I ever thought would be interested in me. You never know what can happen when you just let go and figure out what you require and don't down yourself because you dont' think you meet someone elses standards. They have to meet yours!

Angel

I agree that personality counts for much BUT I like to think I made myself fun to be around during my high school days and it didn't matter....still doesn't...you can be as pleasant/fun/ attractive as you want sometimes and people will STILL just see you for your disability. I find that the difference between those of us who have active social lives and those who don't is the people around us accepting us as is...I guess it's just a matter of finding those people. But sometimes that takes forever and it can be discouraging. I haven't had a problem attracting guys from this chair either so I do know that self perception is incredibly important. I still have trouble finding more than fleeting attractions/friendships and I know it's them, not me.

[petiteblond]

Needing to empty bladder frequently. Especially a hassle and time waster during SATs and AP exams.

[Tawny]

WoW! I have to say that as a parent of a child with SB, hearing that some of your biggest challenges is forming relationships and acceptance in society absolutely breaks my heart. I appreciate the openness of your responses because it certainly points out the areas that I need to focus on as my son grows up.

I have to admit that prior to having a child with SB, I, myself, was guilty of having those awkward moments when I was near someone in a wheelchair or someone who had a clear disability. For me, it was never about being scared of the person (like they had cooties or something). It was always a feeling of awkwardness and not knowing what was appropriate to say and do around that person; not wanting to hurt their feeling if I asked why they were in a chair; not wanting to bring up a "sore subject".

Having a child with a disability has certainly changed me for the good. I will do everything in my power to make sure that my son is treated like he is no different than anyone else.

[mumtotwo]

I have loads of worrys for jamie At moment prob is bladder and bowels and after reading this friendships.
We live in a small village he hopefully will be gong to a small country school with less than 50 pupils so everyone knows everyones business. I was always a very shy person - still am. So his dad. And it terrifies me that my kids will ever feel isolated I know i did alot when i was younger and i surpose still do now. But if i felt this way, he is going to face even more battles than I did.
It scares me that he'll get bullied
That he not be accepted, all parents want the best for their kids and I surpose I never really give it a lot of thought I just take each days as it comes but reading some of your stories I was crying. How to help him face these things that can come up against him??
There so many reasons he can get bullied. I know every child can get bullied but he even more reasons to get picked on and children can be sooo curel.

[NerdaliciouS]

Opportunities. I used to do everything, including put myself through hours of pain just because I didn't want to be left out, but I can't do that anymore. I can't do certain things/go certain places, and to be honest, I do get anxious depending on where I am because I'm terrified that if I fall, I'll be screwed. I also recently learned that some career opportunities probably aren't the best for me because I can't stand long... That hurt... Also because of the whole bathroom thing... Sometimes it cooperates, other times it doesn't. But I need to know where they are at all times. ...I'm like a pregnant woman!

Being able to walk is probably last on my list. I hate the pain, and I hate how I look, too, so I understand that. It's not so much that I find myself "ugly", but more "deformed". And who said their back made them look bigger? Mine does too. And I hate it. I wear sweaters at all times, because shirts? It will draw more attention to it. Can't even wear pants properly because they fall, since I rotate my pelvic area, pull it up over my hips and they'll still fall - even with my belt pulled tight. The only time they stay up is if I buy a size that is so tight I can't sit or breathe!!! And vain, whatever, I hate how I stand, and I hate how my butt looks because of it! lol! Looks nonexistent, lol!!! But I think the walking/standing thing bugs me because in school, people used to call me king kong and stuff. -_- Or raptor.

And the isolation is also bothersome. But I'm not so sure I'd blame it all on the sb. I'm social, but I also don't like people much (probably because some are so cruel...). I don't have problems with relationships, maybe no boyfriends and the such, but I was always fine with making friends. In recent times I actually found out that a friend of mine was going to ask me out but HE was shy! What the heck!? Lol! But I also have the problem of asking if people want to hang out.

The surgeries are nothing. The scars show the battles I've been through; they're intriguing. But yeah, I don't know... Rambled a bit, but not-walking isn't the worst case scenario. =/

[mg357]

for me its personal relationships women tend to look at my wheelchair and not me the nice young man sitting in it that right there is the worst thing about having spina bifida.

[ainemc]

mumtotwo I have loads of worrys for jamie At moment prob is bladder and bowels and after reading this friendships.
We live in a small village he hopefully will be gong to a small country school with less than 50 pupils so everyone knows everyones business. I was always a very shy person - still am. So his dad. And it terrifies me that my kids will ever feel isolated I know i did alot when i was younger and i surpose still do now. But if i felt this way, he is going to face even more battles than I did.
It scares me that he'll get bullied
That he not be accepted, all parents want the best for their kids and I surpose I never really give it a lot of thought I just take each days as it comes but reading some of your stories I was crying. How to help him face these things that can come up against him??
There so many reasons he can get bullied. I know every child can get bullied but he even more reasons to get picked on and children can be sooo curel.


Rosie - (mumtotwo), Caitlin and Jamie will be friends as they grow up and I live in a wee small village too - but alot of people say that's better because it's more sheltered and kids do tend to be nicer than in the city. Well, in my experience anyway! I just announced to the mum and toddler group in my village this morning that Caitlin has sb - and it was fine! I think we worry alot more than we need too lol. If your villiage are a pack of assholes pack up and come to mine lol. Jamie will be a popular kid - I just know it! He's a lovely little boy! Text me if you see this about clinic tomorrow, we there at half 2, what time u there? We should try grab a cuppa after. x